We just got back from our day long journey to Pensacola to see the CF doctor. It is always an adventure when we go to Pensacola. Especially now that we have Thomas, who is now five months, to go along for a whole day confined to either a car seat or a stroller. Today Grami and Pawpaw went with us and helped make the trip so much better!
Some background: Eleanor has had a on and off stuffy nose and just in the last week a crappy sounding cough. She also has started having a hard time dealing with certain things...mostly because lack of sleep and today we found out another reason.
So the great news is that we gained 1.3 pounds since December. I think that I can speak for Robert and I both when I say, "YEAH!!!!" We have worked extra hard to get some weight on her. She knows the routine when we check in and she gets her vitals done. The Respiratory tech tried to get her to blow in the macine that will measure her PFTs but she said she was scared. I knew something was off when she said that. So one of my prayer request is to pray that at our next visit she steps up and blows in the machine. I know she can do it! Last time she did very good with getting her culture and this time she freaked out a little bit but we did get it done.
She then saw the doctor and we talked about several things. One thing being that the flu is going around Hartford so I asked about going to church. You see we do not live in a bubble with Eleanor but we also try to make sure to keep her out of "for sure" bad situations. I hope that makes sense. She has her flu shot but since the flu is prevelant the doctor said we might take a break for a week or two from church to let it run its course. I hate this because she loves going, but I know it is best for her right now.
Another thing we talked about was Eleanor's cough. It is a yucky cough and after listening to her the doctor said she heard the dreaded crackling in the lungs. So we are on an extra one or two vest treatments with her xopenex. Doc went ahead and prescribed Cipro for 21 days. We hope this clears the crud out!! So pray she can maintain a good attitude with all of the extra stuff. She has done good since her other new treatments we added last time, but lately she has been a bit off in her attitude. Pray that this medicine helps clear her lungs and helps get her back to the peppy Eleanor we know.
We go back April 19th as a follow up appointment to see how she is doing. We appreciate all of our prayer warriors.
We get our culture back on Monday...will try to update that next week.
Coleen
Thursday, March 8, 2012
Friday, January 20, 2012
Birth Announcement...to 3.5 months old~~
Hey,
I know I am behind...most of you know by now that Thomas Harold Guilford arrived on October 7, 2011! He is precious and looks like he is going to have red hair like his Eleanor! He arrived via C-section, after a day of being induced, at 11:00 pm. It was a special day as it was my grandmother's birthday and his middle name was her husbands first name. :)
Thomas is growing like a weed and he has a VERY PROUD Big Sis! Eleanor loves him so much! She wanted to wear her big sis shirt everyday after he was born! I am also happy to announce that Thomas is only a carrier of CF!! Praise the Lord he was born CF free!
Eleanor has enjoyed her baby brother very much. She is learning the ropes of having a baby brother in the house and for the most part has done very well with the transition.
As for her CF, we have a new CF doctor and Eleanor loves her! The doc is very attentive to Eleanor and very thorough. I cannot complain. We did leave with some new treatments. We are now on Xopenex, Saltwater 7%, and the quick start vest treatment. The vest treatment is definately helping the "little green men" that were in her chest the doctor heard at our appointment. It is also very vigorous. She cannot talk very well while it is going but as always she is taking it like a champ. She takes her "salt" very well. I have heard it is like breathing sandpaper when you are not used to it but she only mentioned that it tastes really bad. She takes it twice a day now along with the Xopenex. She also was on two antibiotics for strep that showed up on her last culture. She took them like a big girl even though one smelled horrible!
The other challenge we faced was that she only gained .5lbs in six months. This was not great news but kind of expected by Robert and I since she is not wanting to eat. We have amped up her diet so we can put on the pounds without other measures right now. She now drinks supermilk...whole milk with 1/4 cup heavy cream and chocolate syrup. Bacon, two pieces every morning, lots of homemade ranch dip, and smoothie (more like high calorie milkshakes!)
She is doing good with all the new changes in her life. Pray for her to have a attitude of wanting to eat and continue to take her treatments.
She will turn 4 on the 28th of this month! We are having a gymnastics party and she is super excited! Hope to do better with the blog and will link some pix of thomas!
Her culture came back normal from her visit and that is a definate praise!!
Coleen
I know I am behind...most of you know by now that Thomas Harold Guilford arrived on October 7, 2011! He is precious and looks like he is going to have red hair like his Eleanor! He arrived via C-section, after a day of being induced, at 11:00 pm. It was a special day as it was my grandmother's birthday and his middle name was her husbands first name. :)
Thomas is growing like a weed and he has a VERY PROUD Big Sis! Eleanor loves him so much! She wanted to wear her big sis shirt everyday after he was born! I am also happy to announce that Thomas is only a carrier of CF!! Praise the Lord he was born CF free!
Eleanor has enjoyed her baby brother very much. She is learning the ropes of having a baby brother in the house and for the most part has done very well with the transition.
As for her CF, we have a new CF doctor and Eleanor loves her! The doc is very attentive to Eleanor and very thorough. I cannot complain. We did leave with some new treatments. We are now on Xopenex, Saltwater 7%, and the quick start vest treatment. The vest treatment is definately helping the "little green men" that were in her chest the doctor heard at our appointment. It is also very vigorous. She cannot talk very well while it is going but as always she is taking it like a champ. She takes her "salt" very well. I have heard it is like breathing sandpaper when you are not used to it but she only mentioned that it tastes really bad. She takes it twice a day now along with the Xopenex. She also was on two antibiotics for strep that showed up on her last culture. She took them like a big girl even though one smelled horrible!
The other challenge we faced was that she only gained .5lbs in six months. This was not great news but kind of expected by Robert and I since she is not wanting to eat. We have amped up her diet so we can put on the pounds without other measures right now. She now drinks supermilk...whole milk with 1/4 cup heavy cream and chocolate syrup. Bacon, two pieces every morning, lots of homemade ranch dip, and smoothie (more like high calorie milkshakes!)
She is doing good with all the new changes in her life. Pray for her to have a attitude of wanting to eat and continue to take her treatments.
She will turn 4 on the 28th of this month! We are having a gymnastics party and she is super excited! Hope to do better with the blog and will link some pix of thomas!
Her culture came back normal from her visit and that is a definate praise!!
Coleen
Tuesday, October 4, 2011
Eleanor is going to be a Big Sis this Friday!
We are pretty much moved in now and a good thing too because baby boy is scheduled to arrive this Friday! I went to the doctor today and my blood pressure was a little high when I arrived but after laying on my left side it went down. Doctor says when I am this late in the pregnancy (will be 39 weeks this Friday) and the blood pressure starts getting high it is time to have the baby. So I will report to the hospital on Thursday to be induced on Friday morning.
I am ready for him to arrive and for Eleanor to see him. She has been asking when his birthday is going to be for a week now and now we can tell her. We would have never been able to plan it like this but this Friday is my Grandma Shank's birthday (she died almost a year ago) so this is already a special day and it will be even more special when he arrives.
Keep us in your prayers on Friday and I will do my best to get his name and picture uploaded when we get home.
Coleen
I am ready for him to arrive and for Eleanor to see him. She has been asking when his birthday is going to be for a week now and now we can tell her. We would have never been able to plan it like this but this Friday is my Grandma Shank's birthday (she died almost a year ago) so this is already a special day and it will be even more special when he arrives.
Keep us in your prayers on Friday and I will do my best to get his name and picture uploaded when we get home.
Coleen
Tuesday, August 23, 2011
Moved but not quite moved in...
Well, we have moved and are now in Hartford, AL. This moved happened so fast that it is still hard to believe that we are in Hartford. Two months ago if you have told me that I would be in Hartford in August, I honestly would have thought it was crazyiness. Robert was offered a job opportunity in the town he grew up in and after much prayer and wrestling with what we were to do we felt it was the Lord's will that we move back to Hartford.
It was a VERY hard decision to make since it meant uprooting our lives with me being 7 months pregnant. Leaving our church family and friends behinds was very difficult for all three of us, but everything has worked itself out according to His plan. Eleanor misses her friends but is having a ball up here in church. There are several girls her age she loves to play with at church. You didn't think she was going to have a hard time finding friends, did you? :)
Another benefit is that Robert's work is only three minutes down the road. He was driving 45 minutes one way when we were in Florida. We get to enjoy much more family time as he comes home for lunch and get home a little after four in the afternoon. I have to say it is wonderful to spend more time together as a family. Speaking of family we are now much closer to both set of grandparents and I believe that it makes both sets very happy. Eleanor is getting used to seeing her grandparents on a weekly basis rather than a monthly basis. This truly makes my heart happy.
We are settling in up here and trying to get everything in order for baby boy's arrival. He is doing well. My last appointment was on August 9 and he weighed 3.5 lbs and changed from head down to transverse (parallel to the ground). He seems to change back and forth between the two positions making me rather uncomfortable sometimes but what a wonderful feeling it is to feel him move inside of my belly!! Prayers that he will turn head down and stay that way. My next appointment with my new OB is next week. I will let you know how the appointment goes.
Eleanor is super excited about having a baby brother come. She keeps talking about how she is going to change his diaper and teach him his letter, numbers, and on and on... It is quite funny to listen to.
Last but not least, Eleanor had a CF appointment at the end of July and she had gained three pounds and grown a few inches. Her culture came back normal so we are praising the Lord for such a good report. Keep her in your prayers as she continues to adjust to her new home and surroundings.
Thank you for your prayers,
Coleen
It was a VERY hard decision to make since it meant uprooting our lives with me being 7 months pregnant. Leaving our church family and friends behinds was very difficult for all three of us, but everything has worked itself out according to His plan. Eleanor misses her friends but is having a ball up here in church. There are several girls her age she loves to play with at church. You didn't think she was going to have a hard time finding friends, did you? :)
Another benefit is that Robert's work is only three minutes down the road. He was driving 45 minutes one way when we were in Florida. We get to enjoy much more family time as he comes home for lunch and get home a little after four in the afternoon. I have to say it is wonderful to spend more time together as a family. Speaking of family we are now much closer to both set of grandparents and I believe that it makes both sets very happy. Eleanor is getting used to seeing her grandparents on a weekly basis rather than a monthly basis. This truly makes my heart happy.
We are settling in up here and trying to get everything in order for baby boy's arrival. He is doing well. My last appointment was on August 9 and he weighed 3.5 lbs and changed from head down to transverse (parallel to the ground). He seems to change back and forth between the two positions making me rather uncomfortable sometimes but what a wonderful feeling it is to feel him move inside of my belly!! Prayers that he will turn head down and stay that way. My next appointment with my new OB is next week. I will let you know how the appointment goes.
Eleanor is super excited about having a baby brother come. She keeps talking about how she is going to change his diaper and teach him his letter, numbers, and on and on... It is quite funny to listen to.
Last but not least, Eleanor had a CF appointment at the end of July and she had gained three pounds and grown a few inches. Her culture came back normal so we are praising the Lord for such a good report. Keep her in your prayers as she continues to adjust to her new home and surroundings.
Thank you for your prayers,
Coleen
Tuesday, July 5, 2011
It's been three months!
So after three months of no blogging I thought I would let you know we are still here! I have not had an abundance of time lately to blog but wanted to update you on several things.
Eleanor is doing good. She has had a busy summer. We have gone to birthday parties, the pool, Gulf World, the beach, and spend the night parties. I think the last is her favorite one! She starts her round of TOBI tomorrow. Everyday she talkes about her little baby brother and what she is going to teach him! What she is going to teach him varies on what mood she is in but all of it is very funny!!
Speaking of her little brother he is due on October 14 and right now I am currently 25 weeks. His ultrasound for his growth back at 16 weeks showed everything was on track and looking good. We do have one glitch. For some reason I only have one artery and one vein in the umbilical cord. You are supposed to have two arteries. They say it can cause slow growth but he has always measured above average at every ultrasound. Please help us pray that this will continue to not be a problem and this little boy in my belly will be big and strong. We know the Lord has good things for him just like he has for Eleanor. My next appointment is July 19 and will have another ultrasound. I will update everyone then.
One more piece of exciting news! We raised over 51,000.00 at the Destin CF walk this year! Thank you for all of your support of not only Eleanor but of all of the kids and adults who suffer with this disease.
Coleen
Eleanor is doing good. She has had a busy summer. We have gone to birthday parties, the pool, Gulf World, the beach, and spend the night parties. I think the last is her favorite one! She starts her round of TOBI tomorrow. Everyday she talkes about her little baby brother and what she is going to teach him! What she is going to teach him varies on what mood she is in but all of it is very funny!!
Speaking of her little brother he is due on October 14 and right now I am currently 25 weeks. His ultrasound for his growth back at 16 weeks showed everything was on track and looking good. We do have one glitch. For some reason I only have one artery and one vein in the umbilical cord. You are supposed to have two arteries. They say it can cause slow growth but he has always measured above average at every ultrasound. Please help us pray that this will continue to not be a problem and this little boy in my belly will be big and strong. We know the Lord has good things for him just like he has for Eleanor. My next appointment is July 19 and will have another ultrasound. I will update everyone then.
One more piece of exciting news! We raised over 51,000.00 at the Destin CF walk this year! Thank you for all of your support of not only Eleanor but of all of the kids and adults who suffer with this disease.
Coleen
Thursday, April 7, 2011
Easter crafting with Eleanor
Easter crafts!
Today we went to our favorite craft store, Hobby Lobby, and hit the sales on Easter eggs. Tonight after supper Eleanor and I did some crafting. Eleanor told me what she wanted and mommy cut and hot glued! We have an Easter Cow, Bunny, Moose and Chick. I know that cows and moose do not really fit the theme but she was sure that was what she wanted to make! This is such a fun age. I love being able to craft with her like this. It adds another thing for us to look forward to! We even manage to get this in on TOBI nights like tonight. Like I have said before Eleanor has CF but it doesn't have her. We will never let CF define who she is or control what we do. I love that she received some of her mommy's genes and likes to make things. This is going to be fun!
Other news
Tomorrow (april 8) we will be thirteen weeks! So excited everything has been going well. I just seem to have to pace myself because I tire out much faster than normal. Eleanor is cute and continues to talk about what she is going to "teach" the baby when it gets here! LOL! It will be a sight to behold.
Thank you for the prayers and continue praying for us it is felt daily!
Coleen, Robert, and Eleanor
Subscribe to:
Posts (Atom)
